The Norwegian Multiple Sclerosis Registry and Biobank

Multiple sclerosis (MS) is an immune-mediated, inflammatory disease of the central nervous system (CNS) in genetically susceptible individuals. It is a disabling disease of young adults, with no curable treatment available. There is growing knowledge of s everal aspects of the disease, but the ethiology is still unknown, the pathogenesis is unclear and there is an urgent need for diagnostic markers and improved treatments. The relative lack of break through findings in MS calls for improved fundaments for future research. It is a need for representative patient materials for studies within epidemiology, genetics, pathology, and evaluation of long-term treatment. Since Norway is a high risk area for MS and has a stable and a relatively homogenous population that is included in several national health registries, we have a unique possible to generate a large population based patient material that could contribute to high-quality MS research. A National/Norwegian MS registry has been established, and we now f urther aim for collecting biological materials to be linked to the registry. The new unit is called The Norwegian Multiple Sclerosis Registry and Biobank, and consists of a registry unit (the existing National/Norwegian MS registry) and three biobank unit s for collection and storage of DNA, serum, cerebrospinal fluid (CSF) and CNS tissue. The main goal for this new unit is to offer high quality patient materials to MS research projects for identifying exogenous and genetic risk factors for the disease as well as detect specific markers for diagnosis and evaluation of treatment effects. The unit will also facilitate establishment and maintenance of research networks between national and international MS research groups and will make Norwegian MS researches highly attractive for international collaboration. Researchers will be welcome to contact the unit for possible collaborative projects or apply for access to data and/or biological materials.